Heart in VF?

[NeilNicholas01]

Hi all. Can aps be a contributory factor to your heart going into VF? I had an episode on the weekend and admitted to hispital and I've now been put on beta blockers. Has anyone else experienced anything similar and did they change your aps related medication? Thanks

[MaryF Administrator]

HI, others on here have had such episodes, I hope they are sorting you out! I will let those that have problems with this answer you, as not something I have had. MaryF

[NeilNicholas01 in reply to MaryF]

Thanks Mary. They've doubled my dose of apixaban as well as even though I've tested positive twice for aps a third test was negative so consultant decided to just treat me for my F5L. Wondering whether this decision has any bearing on this. Thanks again

[Lure2]

Hi,

I wonder if you have contact with a Doctor now who is specialized in autoimmun illnesses and especially Hughes Syndrome? We need such a Doctor!

It is important with heart-issues (I have Pulmonary Hypertension and leaking heartvalves) that we are well anticoagulated thereby first of all improving blood flow. We have very thick blood.

See to it that you do not have too high bloodpressure. I had exstremely high BP before I was well anticoagulated and needed 3 different drugs for that. I am also on betablockers since several years ago.

I wonder if you should be on Apixaban as you probably need a higher INR and should be on Warfarin. Talk to your Specialist about this.

Best wishes from Kerstin in Stockholm

[NeilNicholas01]

Thanks for your reply. Asked my GP to refer me to aps specialist in Cardiff but he refused siting that my haematologist is doing a good job. Maybe this will persuade him to change his mind.

[Lure2]

It is vital that we find a Specialist as soon as possible as our thick blood makes damage to our body. I know what I talk of from own experience.

When we are anticoagulated the different symptoms will disappear or not increase. Most of us need a high INR ( I selftest on an INR of around 4.0 today). Depends on what antibodies we have and how high titres and sort of symptoms (arterial clots or venous clots or both).

"Sticky Blood Explained" by Kay Thackray is a good book. She has got Hughes Syndrome/APS herself with cardiac issuse also and writes about the different symptoms. It is not quite new with the latest oral drugs but the symptoms are still the same and also a book for relatives to understand how it is to live this this disease. It is a "fight" for us to get a Specialist.

Hope you can see that Specialist in Cardiff !

Kerstin

[Julie_T]

For the first time GP surgeries are being inspected by CQC (previously only responsible for residential/nursing homes & hospitals). Part of their remit is to monitor complaints and how they have been dealt with, which means that the surgeries are keen to deal with issues before it gets to that stage where possible. Also they have had to create patient advisory groups which might be a good place to air your concerns NeilNicholas.

Good luck

[Manofmendip]

I agree with the advice that my colleagues have given you.